still EEG'in

Lars' eeg that started Friday is still on, the battery having been recharged at Children's hospital on Monday. Little guy is not necessarily too happy about having his head all wrapped up for going on six days now. Slept absolutely horribly Friday, Saturday & Sunday nights when I had him. Yikes was I exhausted. Sunday night I got a wopping 2 hours of sleep & that was interrupted 3 times. Really restless & then up at 1:30 a.m. Huh? He was with Andey last night & she reported more restlessness, but also more overall sleep.

A friend at school described him as "a cute little ali-baba today all wrapped up." He is cute, you gotta give him that. I've got some pictures I'll try to post soon of the roving eeg boy.

I mentioned that he had his first "normal" EEG. What that means is that the background rhythm of his brain waves has matured and normalized from something chaotic and irregular to something that's regular enough to fit within normal limits for his age. It doesn't mean he's not having seizures. What Lars' epileptologist wanted to know is whether what we see that we think are seizures--eyes roll to the side, maybe a hand moves, seems unresponsive--are actual clinical seizures or just neuro-events-Lars-checking-out events. We have been giving him diastat and sending him home from school, for example, when he has what qualifies as a 'cluster' of these kinds of seizures. We want to know whether they actually are or not. So they're leaving the EEG on longer in hopes that we catch one, can mark it by pushing the button, and then they can go back and check out the recording of that time.

It's a funny thing to wish for seizures, but it would be nice if he would have a couple of what we're thinking are seizures so we can check them out. He had a maybe-event at school yesterday.... Michelle is taking him back to Children's today after school to either get the battery recharged again, or to get the whole thing off.